I posted this on Facebook earlier today, after I left the pharmacy. After a few requests to make it public so friends could share, I did—and it seemed reasonable, 12 shares, 45 reactions and 59 comments later—many shocked that this happens in Canada—to post it on my blog, too.

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Do you know why Canada needs true national Pharmacare?
I do every day, but especially on days like today where I leave $642.01 behind at the pharmacy counter just to function for a month, for just 4 of my 7 meds. 

Did you know that despite being self employed and having two part time jobs, I can’t get insurance in Canada that covers medication for my preexisting conditions? Okay, actually I can, but it would cover $500 in medication: less than one tenth of my annual medication costs. Less than I just paid today. 

  • I can survive without Vyvanse for my severe ADHD, but I can’t thrive. That’s the expensive one, and it’s not an enhancer, just a sort-of equalizer. 
  • I require four different inhalers to manage my moderate-to-severe asthma. (One of those I’m on right now isn’t covered for asthma under Manitoba Pharmacare, so I pay out of pocket. Despite how well it works, I’ll switch it for another drug in not-winter to save money.) This is to BREATHE, which is not exactly optional.
  • Barring other radical intervention for my fibroids, I’ll need to stay on oral contraceptives for another several decades–and this is the only drug I may have a forseeable end date on. Despite my persistence, this is not optional. (And also, even if I were using them for contraception, does the province not realize paying for the pill for a decade is cheaper than probably just getting a baby born? Never mind making them a good human?)
  • Oh, and on top of the asthma medicine, I have allergic rhinitis, for which I consider the drugs “the optional ones”, but only because my sinuses aren’t super impairing–note, my doctors disagree with the optional-ness of daily nasal steroids, and support the use of singulair as an add on. 

I am productive and mostly healthy because I have these medicines. I’m lucky I can afford the deductible which is thrown at people like me in a lump sum at the beginning of the fiscal year. I will have another pharmacy trip or two where I leave a not-insignificant amount of money behind. Just because I can afford this now–with minimal expenses, living with my parents–doesn’t mean I’ll always be able to. 

Am I happy to have some provincial coverage? Yes. 
Do we need to do better? Unquestionably yes.

We need this for every person who needs to choose between food and medicine. For every person who cant financially handle a $500 emergency—40% of Canadians. For the parents who forgo their meds to let their kids play soccer–and for the ones who can’t play soccer because their parents need medicine. For every would be enterpreneur who could change the world but is stuck at a job because of benefits.

We need this to be a better Canada–that place where healthcare is a right because we take care of each other and we take pride in that. Except we stopped short, leaving patients who are still patients after they leave the doctors office often fighting to survive. We need more than “gap filling” solutions, we need Pharmacare for everyone, all the time. 

Canada, we can do better.

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Do you have a story about inadequate access to medication or medication coverage in Canada? Please SHARE IT so others know why this issue matters. One way you can share your story is to reach out to my friend Bill at FacesOfPharmacare.ca. You can also send your story to your Member of Parliament (find them here), and most importantly, VOTE in October for a candidate who supports a true national Pharmacare strategy for all Canadians.

It’s the first day of spring and, how they say, the anniversary of the first day of the rest of my life. There have only been three posts here between today and my last ADHDaversary—my fifth. And I can chalk that up, too, to ADHD.

The words from last year’s post are just as true today, except for some numbers that have increased by one. I’m still just doing my best to balance everything (which some days isn’t too good), to try to focus on what matters, to try to be mindful. Yes, ADHD makes that all a challenge, and general life makes it a challenge, too. That’s just how it works. We’re all constantly works in progress and I’m down with that (mostly. I mean, it can suck sometimes having to work at being awesome).

Every so often though, I’m reminded of why I share these stories online. And, without me realizing it this time until my ADHDaversary popped up on my calendar, just that happened yesterday. A friend from high school who I’ve recently re-connected with mentioned her current quest towards diagnosis of whatever may be causing her struggles with executive function (more about WTF that means here), and beginning ADHD medication. I threw her a blog link to my starting concerta post from 2013 and from a Facebook post she sent me a message, and a conversation began. (It also covered where has vegetarian/vegan gravy, because hello, you can’t expect anything to stay topical, who do you think we are? But I digress…)

Again, I was reminded that at least on occasion, people are actually reading this thing. I was reminded that you just never know who your story is going to impact. Not just in this case, but within a single-sentence story my friend told me:
“[My fiancée] originally actually told me about how you were instrumental in her getting her diagnosis and treatment!”

This is why the power of simply telling your story, sharing with people where you’re at is so important. Because someone who comes after you will also be there too, needing that reassurance that they are not the only one. No matter what that story is.

So, I will continue to trust the process that this, too, is getting to the right person, when they need it. 

Your story is important.
Keep going. 

Well if nothing else, this year I will [probably] at least do a monthly blog update to tell you about what I’ve been reading. Whether or not this is actually interesting is a whole other story, but whatever, it is my blog. 

This month brought the theme of more things that are terrible or at least suck mildly, but make very interesting books. 

I finished off 12 books this month—down 3 from last month if we are quantifying this, but there are also no short fiction books on this list like there were last month, such as the 27 minute read that was Steal Like an Artist, and 3 less days in the month. 

Here’s what I read in February 2019:

  • Without You There Is No Us: My Time with the Sons of North Korea’s Elite – Suki Kim. I’d understood the culture of North Korea to be restrictive, I didn’t know what that “looked like”. American/South Korean journalist Suki Kim goes undercover as an English-teaching missionary in a boys school in North Korea (Yes. Journalist undercover as a missionary under cover as an English teacher), the resulting book is extremely interesting.
  • Bringing Columbia Home: The Untold Story of a Lost Space Shuttle and Her Crew – Michael D. Leinbach. I remember watching news coverage mixed with the Saturday morning cartoons. It is one of those things, like 9/11, that burned into my pre-teen mind at age 12. I was not aware of the intense search for debris, for remains, the painstaking efforts to return the pieces found in Texas to Florida to “reconstruct” what happened, written by then Shuttle Launch Director, recovery team leader, and Columbia Reconstruction Team leader, Michael D. Leinbach.
  • Prisoner: My 544 Days in an Iranian Prison—Solitary confinement, a sham trial, high-stakes diplomacy, and the extraordinary efforts it took to get me out – Jason Rezaian. After listening to this episode of Pod Save the World, I quickly dove in to Rezaian’s account of what happened after he and his wife were imprisoned by Iranian authorities. (If you read this book, the podcast is likely a great pre- or post-listen, as it includes former Obama Deputy National Security Advisor for Strategic Communications, Ben Rhodes, who worked among the team to free Rezaian, adding a whole other layer). This book does a good job of also capturing the attempts made by the Washington Post and US authorities, that from the inside of Evin Prison, Rezaian knew nothing about.
  • Playing Dead: Mock Trauma and Folk Drama in Staged High School Drunk Driving Tragedies – Montana Miller. I actually downloaded this one by accident from Bookshare but decided to read it anyways. As someone who participated in a “Day of the Dead” in high school, the possibly Canadian version of “Every 15 Minutes”, I was curious about any effectiveness/deterrence research surrounding these staged events. I was also shocked by the huge dramatization and special effects involved in these “performances” at US schools investigated in this book. By the way, it was a tough slog, and I gave it 2/5.
  • Playing Dead: A Journey Through the World of Death Fraud. The book I was actually intending to download also could have been more interesting than it actually was. The author really rambled on a lot about her own fantasies of just disappearing, but instead of disappearing she writes a book about what happens to people who choose to disappear.
  • Then They Came for Me: A Family’s Story of Love, Captivity and Survival – Maziar Bahari. Another book of a captured Canadian-Iranian journalist at Evin Prison in Iran. This book, turned into the movie Rosewater, focuses much on the interrogations Bahari underwent, and his family’s pursuit to free him. Contrasting this with Rezaian’s book was also interesting. 
  • Parkland: Birth of a Movement – Dave Cullen. Author of COLUMBINE, Dave Cullen’s tactic in this book shifts from what happened during the Parkland school shooting and discovering the motives of the shooters (as he did in Columbine) to a focus on the uprising of students to protect any more kids from dying or suffering as a result of lax firearms laws. He spends weeks, months with the kids who started #NeverAgainMSD—and those who felt in left in the shadows—and crafts a comprehensive story. Reading this on February 12, just days before the one year anniversary of the Parkland shootings, I was repeatedly shocked by just how recently this all unfolded.
  • Parkland Speaks: Survivors from Marjory Stoneman Douglas Share Their Stories – Sarah Lerner (Ed.) An often heart-wrenching collection of writings, stories, and poems from MSD students processing the tragic shootings at MSD. (As usual, I constantly wanted “more” information and of course, this is not the book nor format for that.) 
  • Poison Candy: The Murderous Madam: Inside Dalia Dippolito’s Plot to Kill – Elizabeth Parker & Mark Ebner. Dalia Dippolito hires a hitman to kill her husband—the day of his “death” she arrives home to police, police cars, and police tape, and is taken to the police station… To find her friend reported her intentions to police and her hired hitman was, in fact, an undercover police officer.
    My Goodreads review says it best: “I think this book COULD have been really good but it was written in a way that was so boring. I heard about this case from the Court Junkie podcast [which I’d gotten into days before], and wanted to learn more but beyond some random tidbits, the time invested in a 40ish minute podcast was much more worthwhile.” (Here’s the podcast.)
  • Maid: Hard Work, Low Pay, and a Mother’s Will to Survive – Stephanie Land. Recently, my friend Ryan wrote an article for CNN about this book’s author. It provides an “insider’s” perspective at a position nobody wants to be in: homelessness, transitional housing, and working minimum wage jobs to survive. This book is an eyeopener into the “working poor”, and why it can be so hard to get out of the trenches, when the government support that allows you to pull yourself up is stripped back as soon as you hit a barely survivable income level.
  • The Year of Living Biblically: One Man’s Quest to Follow the Bible as Literally as Possible – A.J. Jacobs. An agnostic dude who writes memoirs about things he does for a living writes down all the “rules” from the bible and tries to follow them as literally as possible for a full year. While a bit “long” at times, I was constantly captivated by the logistics of this pursuit—from goodreads “which, let’s be honest, a book like this could definitely be boring, which it was certainly not.”

26/115 — 23% of the way to my goal in 16% of the year. Hopefully I continue to crush this one ;). 

What are you reading?

I’ve written before about the massive impact that services like Bookshare and the Centre for Equitable Library Access (CELA) have had on my ability to enjoy reading longer or more complex books given my learning issues. I think what happened before is that my visual processing/comprehension abilities got outpaced by the books I wanted to read, thus leaving what I was truly able to tackle limited. Fortunately, switching to consuming books mainly by audio has truly changed things for me. At the rate I’m going, I’m going to crush my reading goal of 115 books this year, having read 15 in January alone! Except, two of them were sort-of “cheaters” because they were really short reads I’d acquired from Bookshare near the end of 2018 for “just in case” purposes. But I mean, a book is a book!

Here’s what I read in January 2019. (And yes, I’m still on occasion typing 2018!)

  • The Girl with the Broken Heart – Lurlene McDaniel Far less sappy than the title sounds, this is actually about a girl with a heart problem. But also about love because that is what Lurlene McDaniel does, basically. Teen/YA.
  • Steal Like an Artist: 10 Things Nobody Told You About Being Creative – Austin Kleon. Super short, I think this took 45 minutes to read. Probably one I should read on a regular basis until I commit it to memory. Also, I just read the first two lines of this review by a dude named Peter and I think he’s spot on.
  • The Deepest Secret – Carla Buckley. This one had enough twists I just wanted to keep going. And then [semi-spoiler] it just sort of ended. I have so many questions but I don’t know if I have enough questions for a sequel, if that makes sense.
  • Dancing with Dementia: My Story of Living Positively with Dementia – Christine Bryden. Like any memoir of this nature, it was captivating but also representative of many best-case scenarios.  Super interesting, however, and captures a form of (non-Alzheimer) dementia not as readily understood by most.
  • Meant to Be: The True Story of a Son Who Discovers He is His Mother’s Biggest Secret – Walter Anderson. You know when people discover they’re adopted after doing an online DNA test or whatever? This book was like that except without the DNA test.
  • A Life that Matters: The Legacy of Terri Schiavo — A Lesson for Us All – Mary Schindler. At the end of 2018, I read “the other book” about Terri Schiavo by Mark Fuhrman, “Silent Witness”. In 2005 when the most urgent parts of this case were unfolding, I was in Orlando—at 13 years old, I didn’t understand but the urgency of Terri’s story always stuck with me. This book was written by her mother, and I’d still be interested in reading an account by her husband Michael Schiavo, from the “other side”. I ranked both this and Silent Witness 3/5, though I experienced a much greater cognitive dissonance with the inability to “let go” in Schindler’s book given Terri was not truly Terri anymore. (I tried not to let my opposing political views play into my rating, but it was hard.)
  • Killer on the Road: Violence and the American Interstate – Ginger Strand. After the construction of the US Interstate Highway System, murder rates began to shoot up across America. I started this December 30 but finished it on January 7 with quite the break in the middle—I think the styling initially made it difficult but I got through the last 35% really quickly so maybe it was just me.
  • Unhinged: An Insider’s Account of the Trump White House – Omarosa Manigault Newman. Yes, I finally read the Omarosa book. I still don’t think I know my thoughts on it.
  • Between a Rock and a Hard Place – Aron Ralston. This is one of those books where you know how it ends but you have to still find out how it happens. This is the one where an experienced outdoorsman gets his arm caught beneath a boulder and has to decide how to free himself, ultimately cutting off his own arm and somehow living to write a book about it.
  • Al Franken, Giant of the Senate – Al Franken. Despite that Al Franken is no longer a Senator, I decided to read this memoir. It was quite funny at times but also was sort of trying too hard, though I think that goes with the “award-winning comedian who decided to run for office and then discovered why award-winning comedians tend not to do that” territory. 
  • Tragedy in the Commons: Former Members of Parliament Speak Out About Canada’s Failing Democracy – Alison Loat, Michael MacMillan. I’m not sure I agree with the title, but I did find this an interesting read (with some familiar names). The best part of this, to me, was learning more about the dynamics in the House of Commons. (I’ve since started reading “Procedure in the Canadian House of Commons” which is not quite as dry as one might think).
  • Raven Rock: The Story of the U.S. Government’s Secret Plan to Safe Itself — While the Rest of us Die – Garrett M. Graff. This book was fascinating in a terrifying sort of way, describing the secret underground facilities for saving the lives of government employees and the inner workings of an alternate government should a nuclear bomb hit Cold War America. (Also, I learned there are/were similar secret underground bunkers here in Canada, too.) 
  • Private: Bradley Manning, WikiLeaks, and the Biggest Exposure of Official Secrets in American History – Denver Nicks. In 2010 in a sociology class we had a massive discussion about WikiLeaks that continued throughout the 6-month term following the Collateral Murder video release. Since then, like many, I’ve been captivated by the whole WikiLeaks story. (However, while this was published in 2012, before Chelsea Manning’s transition, I spent the whole book “correcting” these things in my head, though I realize contextually this would have been challenging.)
  • The Most Dangerous Man in the World: The Explosive True Story of Julian Assange and the Lies Cover-ups and Conspiracies He Exposed – Andrew Fowler. Continuing on the WikiLeaks train, this book was far less memorable than the one focused on Manning. It was honestly a bit boring, sadly.
  • You’re Welcome, Universe – Whitney Gardner. I was really pleased with this book’s ability to capture disability while making the character actually, you know, have other character traits than being d/Deaf. Julia is kicked out of the School for the Deaf for graffiti to help her friend, and must find her way in a mainstream school—this book has a lot of nuanced plot aspects without being too unrealistic. I actually gave it 5/5. Teen/YA.

15 down, 100 to go. 
What are you reading? 

(Hello blog, it’s been forever.)

Hello, 2019. 

I’m not into resolutions, as we’ve probably discussed before. Or maybe we haven’t, because I haven’t written anything here since March, apparently. Either way, I’ve written a lot about goal-setting elsewhere, so while I know how to set goals, I’m not into planning to tackle things which I’ll never accomplish just because of a truly arbitrary date known as January 1. Let’s be honest, I’ll spend the first 4 months of the year turning the 8 into a 9 when writing 2019. 

That doesn’t mean I’m going into 2019 unfocused though. (Well, I mean, I presume I will remain unfocused.) After ringing in the new year with The Trews (preceded by The Treble and Attica Riots, which happened after a Moose hockey game—so yes, an overall kickass New Year’s Eve), at 1:21 AM I threw a note down in my phone.

Bullet points for 2019:

  • Blog more (personally)
  • See more live bands
  • Travel for fun
  • Read interesting shit
  • Embrace awesome moments.

That’s it. And that’s enough of a plan; I can make the rest later. Because “Who says it has to be the new year to start a new year?” 

As such, I hope my next post here doesn’t start with “Hello blog, it’s been forever”. That I keep up my excellent start to this year seeing more bands play live. That I do as I did last year and travel more for fun, not “just” for conferences (though hopefully I do that too!)—last year was Montreal with Dia, Orlando with my parents, the Holiday From Real Roadtrip from Palo Alto to LA with Ryan, and to Penticton, BC to see Bryan and David (thanks to Air Canada for stranding me in Toronto and then giving me a flight credit for that last one!). Hopefully I tell those stories here, in keeping with point number one. The last two are easier: I feel my reading materials diversified somewhat last year, thanks to Bookshare mostly—I mean, that doesn’t mean I didn’t just start reading a lot of true crime, but hey, that’s a departure from mainly pure YA. And finally, embracing awesome moments—whether that’s just in my head, via mindfulness, or chronicling them somewhere, too.

We’re off to a strong start 2019. Let’s keep it going. Stories, music, friends, family… and all the other good things.